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Sunday, 22 December 2013

Christmas Holiday, Day (Minus 2): I try out my theory that sex
will stop a panic attack in it's tracks. B and I are in the living
room and there is a knock on the kitchen door. My mother walks in.

Ma: "Hello! Only me! Oh. Well. I'll go and cut that holly from your garden before I take my boots off!"B: .....Me: .....

Ten minutes later.

Ma:
"Hello! Only me! Glad to see you're feeling better, Ally! I was
speaking to Aunty Edith and Aunt Myra earlier and they are both well.
And getting VERY DEAF! AS I AM! Anyway. Glad to see you're both a bit
more cheerful! B: ....Me: ....

Conclusion: Panic attacks can be side-tracked by either endorphins or embarrassment, but I am not yet sure which.

Christmas Holiday, Day (Minus 1): Nothing dreadful or chaotic happens. I mark this in my diary.

Christmas Holiday, Day 1:
Nenna does not want to get dressed and screams for forty-five minutes
instead. Nenna does not want to eat or drink. Nenna has a
post-antibiotic infection. I ring the NHS 111 helpline thing to ask
whether I can use Canestan on her. They ask all sorts of questions
designed to rule out sexual abuse and insist on an appointment. B
takes her in and after one look at her the out of hours doctor
prescribes ... Canestan. Nenna and B arrive home after two hours
wasted driving round Somerset.

Christmas Holiday, Day 2: Leo
wakes Arvo at 5.30AM. Leo makes mince pies. There is flour all over the
kitchen, B and both children. For the third time we lose part of the
Studio Giblhi box set intended for Christmas and discovered by Leo
yesterday. Something mauls one of my Barbu d'Anvers bantams in the shed
and I have to wring it's neck.

Thursday, 24 October 2013

Would you all care to join me in thinking the unthinkable for a moment?

I
read a thing, a while ago, by someone with a severely ill child. She
wrote that most people in that situation had a Plan A and a Plan B.

Plan A is how you are going to provide for your disabled child if you die before them.

Plan B is what you are going to do if your child dies before you do.

No-one should have to make these decisions, should they? But we are.

We've
got Plan A more or less sorted. Life insurance, guardians*, letters of
wishes, all of that. It's nice to feel that it's all tied up and it will
all become Somebody Else's Problem if we both cark it suddenly in a
Statistically Unlikely Electric Blender Incident or similar.

Plan B and I'm fucked.

Plan B varies from day to day, swinging so wildly from one end of the spectrum to the other that really, there IS no plan.

A
part of me thinks that we will just trundle along as we are. Same
house, same routine, same work, same school for Leo. Routine, Routine,
Routine. Good for us, good for Leo. He'll need stability, he'll need his
friends around him, WE'LL need the same. My mother, my sister. People
to lean on when we sit at the top of our metaphorical stairs, sobbing
too hard to be able to descend them and start our day.

The
other part of me is planning a Great Escape. Drop everything that can't
be fitted in to the camper van and leg it. All our roots, all our
books, all our bedding and the tea-spoons; all the nik-naks of our past;
shared or pre-marriage. Freecycle the fucking lot and drive off in to
the sunset. Take Leo out of school for a year or two. Circumnavigate
Europe. Attend mass in St Peter's Square and dance on the bridge at
Avignon. Travel the Silk Road to Saamarkand and see Tamburlain's grave.
Spend six months walking the Camino from Vezalay to Santiago de
Compostela.

I am flailing. I can't see where we're
going and I can't see a way out. I feel like every aspect of my self and
my life is being squeezed in an enormous vice - there's no way out, no
way back, no alternatives. All I can do is move forward, squeeze through
each hour, each day, each week.

How can we work out a
Plan B without knowing how long we've got? All we can do is go from day
to day and try to keep all the plates in the air. And when we get
there, we just have to hope that we'll know what to do.

She
also has a small Cerebellular Folia, examined by MRI last year, which
is what is causing the Ataxia. I can't find anything helpful about that
that I understand.

These four things have pointed them to various
gene groups. The genes are checked one by one and as each one comes up
clear they move on to the next. That is why it can take up to twelve
months. I don't know whether there is a standard order in which they are
tested, or whether they start at the best guess and work out from that.

In other news:

1.
Nenna is sitting on the sofa with her head under a blanket, watching
Charlie and Lola on her iPad and occasionally sticking her head out and
shouting "BOO!"

and

2. Arvo has inadvertently taught her to say 'shitbags!'. Luckily her speech is so poor that it just comes out as 'BAGS!'.